A video has been showing up in my news feed lately. It was produced by a group called Born Different. As I scrolled the video began to auto play. The caption caught my eye. ‘These twins with severe autism were forced to stay in a prison-like home surrounded by chicken wire fence. Rather than give up, their parents persevered to improve their behavior.’ I paused for a moment. A video about severe autism. A video about my world. A video that shows behaviors and our realities. The realities I lovingly…
I often wonder how many people actually care about these awareness campaigns. I don’t mean that pessimistically. There are many wonderful people that try to educate others on many topics. However, as realists, most people don’t care unless they are somehow connected to the illness or disability, and there are so many of them. October is breast cancer awareness month. February is wear red for heart disease in women. June is Alzheimer’s and Brain Awareness Month. Literally, every time I’m driving I see a bumper sticker for some kind of…
Two months ago I knew that my son knew all of his letters. I knew he loved the alphabet with a passion. But I didn’t know what else to do with it. He struggled to pay attention. To focus. To sit and learn. He showed no desire to read or write. But, and there is always a but in our world, I started imagining a world where he could type to me and have a conversation through text. What would he say to me if he could? And before I…
For years I longed for kisses and hugs from my autistic son. But, it never came. He’d gladly receive affection and even ate it up and yes, I was thankful for that. But before autism I just assumed affection came naturally. I had no idea that teaching a child to ‘give’ affection could be a challenge. Or even a skill that needed to be taught. On top of not willingly showing affection, Cooper simply didn’t know how to actually kiss or hug. Due to his Apraxia, his lips are unable…
Note: This guest post is directly dictated. Including punctuation. My son literally stood beside me and told me where to use BIG words and “one of those lines with the dot at the bottom.” Enjoy his perspective. Hi, I’m Elijah and I have High Functionality! (That’s my name for High Functioning Autism. I like High Functionality better because it sounds like I’m highly functioning, like a robot!) I like Minecraft and Legos! And other things. I move from thing to thing and sometimes I’m into magic things, sometimes I’m into…
Last night, I had a dream that my nonverbal son had a conversation with me. We were walking along a path, holding hands, laughing and smiling. He was pointing things out to me. For some reason it was really beautiful. The sky was colorful. The trees and grass were so bright and vivid. I remember noticing how calm we were. How he wasn’t flapping or running or screaming. I could hear mumbling but in my mind I knew that it couldn’t be Cooper speaking. My autistic son doesn’t speak. Then…
My most favorite thing is having conversations with Sawyer. And typically, the best ones happen while I’m driving. Yesterday, on our way to a birthday party, he asked me if he will ever get to ride a dinosaur and who decides where the roads start and stop. He asked me if we were rich. When I told him no he asked me if he could get a job. He told me a fascinating story about how his dad ran out of gas and had to walk to the gas station…
I thought for sure I was going to be the perfect mama. Well, not perfect because let’s be honest here. But, I guess I thought life was going to be relatively easy. You get married. Have babies. Work. Live. Try and drink enough water. Exercise. Keep your kids from turning into little monsters. Teach them. Love them. Take them to the dentist and yearly check-ups. Find time for your spouse. Laugh. Love some more. And grow older. Retire. Be thankful. I thought that was life in a nutshell I guess.…
Truthfully, autism is never my friend, but today was one of those days where I wanted to punch autism in the face. Triggers have always been a part of our autism world. As much as we try to avoid them, they rear their ugly little heads often, and all too often when we least expect it. Our eleven-year-old daughter Lilly was diagnosed just before she turned three, and over the last eleven years, we have seen triggers come and go. Most of her early triggers stemmed from her OCD. She…
My son has autism. He is autistic. Whichever you prefer that I say I guess. He is the happiest child you will ever meet. He moves through his life with a simple, silly, determined way. His days are filled with hugs, kisses, trains, his Kindle and joy. Every day is the best day of his life. And as his parents, we work VERY hard to make sure his world is perfect. That will not change. Lately, I have been seeing, reading and hearing about the unique shaming that happens to…
